Brainwashing and brain tumors
I was raised in what was effectively an anti-science cult of my father’s manufacture. He is a chiropractor, and a figure of some prominence in the anti-vaccine movement. In many respects my parents' worldview reflects stone age, pre-scientific thinking, which unfortunately is often anti-science as in opposite to scientific principles. A large part of this is generally thinking non-reductionistically. The level at which one seeks to understand the natural world is only to describe it, but not truly to explain it. One is contented to conclude that something works without asking how. To some extent, this is understandable: There are good reasons that the development of the scientific method took some hundred thousand years after the development of language. Our brains do not innately come with such concepts; this is why we begin life with many years of training in which teachers catch us up on what’s been going on these last few thousand years.
The naive view of the world is one where you are a single entity. For my parents, the discovery that humans are composed of cells should have no import on how we understand the relation of humans to the natural world. This is ridiculous, of course; I can barely imagine any single discovery that should have a greater impact on one’s philosophy.
As with any religion, my parents indoctrinated me into all of this completely for many years.
As a devotee I advocated ‘alternative medicine’ and conspiracy theories. In eighth grade I asked my science teacher why he had decided not to teach creationism.
As a family we didn’t see medical doctors, so none were able to notice my early symptoms which began in childhood, and included developmental delays of various sorts. In hindsight many difficulties were rooted in this fact.
At age fourteen—more or less overnight during a family trip to Florida—I began displaying severe polydipsia and polyuria. That is, I suddenly needed to urinate every ~3/4-1 hours, and to drink in excess of two gallons (~ 7.5 L) of water each day. These are very clearly the symptoms of diabetes insipidus, as any competent medical doctor would have recognized, and any standard panel of blood/urine tests would have revealed a severe mélange of endocrinological damage. In concert I developed a recurring cough.
Unfortunately, the sudden drastic change in my health didn’t result in me seeing a medical doctor. That wasn’t how my family believed the world worked.
Looked like my body was just working through something I guess.
There was no recognition from my parents that I was really going through a serious issue. In fact it took more than a year for my mother to stop asking me if I really tried not to drink so much water. Thus began some four years of me pleading to see a doctor, during which time I was explicitly disallowed from referring to myself with words like “disease” or “sick”.
Since there was no place in their worldview for me to be having a serious issue, there was likewise no accommodation for it. I had to figure out myself that I needed to always be prepared with a large quantity of water nearby, and that I always had to have planned out where the nearest bathroom was. I was now constantly sleep-deprived from needing to wake up to drink and urinate multiple times each night. I likewise began having weird thermoregulation issues (in hindsight, presumably from hypothalamus damage)—my thirst could only be sated by very cold water, I began getting headaches with too much time outside in the heat, at night I had to sleep under three heavy comforters. I had to work out how to get myself cold water at night, and it took years for my family to stop using my ice cubes without refilling the trays. I had to plan routes to a bathroom and a water fountain between each class in school, and I had to constantly run across campus to try to prevent myself from not being late to classes. I had to just try to ensure I was never in a car or a bus or a train for longer than an hour, which was impossible when we lived an hour outside of downtown Philadelphia and from my school in normal traffic.
Oh I should mention achronologically that there is a fantastic, and cheap, and extremely safe medication called desmopressin which now replaces the antidiuretic hormone my brain damage results in my pituary not producing. This greatly alleviates many of these symptoms, but unfortunately it was more than seven years during which I was just left to endure severe vasopressin deficiency on my own. After all, we didn’t see medical doctors and we certainly didn’t take unnatural drugs.
While my parents eventually began seeking remedy for me, neither the acupuncturists nor the homeopaths nor the chiropractors helped, despite many false promises.
And no usage of hypnotism or crystals or massage or magnets or astrology or pilgrimage or tarot or essential oils or incense
or any of the other ‘alternative therapies’ to which I was subjected were of any use.
But all of these appointments, sometimes plane rides away, certainly did make it harder for me to spend the time I needed on schoolwork.
In concert with internal turmoil of questioning my parents' ‘holistic’, stone age view about how the world worked, as these medical charlatans failed to have any effect on my symptoms, I began to ask my parents to take me to a medical doctor. They refused. Those years in high school were quite difficult for me, and I’ll probably write more on them elsewhere. But they were filled with shouting matches, and multiple months-long periods where my father and I did not speak.
Early in my senior year of high school I finally managed to see a medical doctor who immediately recognized my suite of endocrinolgical symptons. After an MRI I was diagnosed with two intracranial germinomas—brain tumors—and told I would likely die without treatment. My parents refused treatment. Child protective services became involved. My father kept a bag packed with supposedly everything we needed to drive to Canada and hide.
Determined not to delay my schooling despite all this, I applied to colleges a couple months later. My school’s college advisers told me I shouldn’t mention my brain injury in my college essay. Ever overly concerned with what should be rather than what is, I ignored their advice. After a flurry of rejections I ended up taking a year off and applying to colleges again. I didn’t make the same mistake.
Once at Penn and on the mandatory student health insurance I was finally able to be a patient of an endocrinologist. On my first visit he prescribed me a safe, cheap, wonderful pharmaceutical which greatly improved my quality of life. Among other things, for the first time in six years I was able to sleep continuously for more than ~2 hours.
I haven’t had any contact with my parents since undergrad. This was not a move I made lightly, but it certainly was the right call. Not only for improving my mental health, but also as a final, extreme expression of disapproval of my parents' activities. But that’s not to say that I don’t envy my peers for their relationships with their families. I had nowhere to go during school breaks, and no real support network. Surely this made the struggles of graduate school that much harder.
The pandemic has been difficult for my mental health in multiple regards, but none perhaps as bad as knowing my parents are still out calling covid a scam and villifying Fauci and refusing to weak masks. Unfortunately my father still has a large audience, and his contributions over decades to this national plague of anti-science sentiment has loomed large in my mind.